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The survey proceeds via a description of the literature search on PEG. The primary tools used in this search are the topical search (e.g., “socio-psychological impacts of PEG feeding”) on the internet and the exploration of various databases, such as Cinahl, PubMed, Medline, Cochrane, and Google Scholar. The literature used refers to reports of “new” (i.e., past decade) findings. In a very few cases only, when outlining “illness responses” to “disease” and the ensuing person-oriented framework, a few basic sources pre-dating 2000, are drawn upon.
The accompanying review of relevant sources attempts to bring out the emphasis of “disease” and the omission of efforts to develop a framework or model and conceptual tools to grasp the social and psychological implications of artificial feeding due to disability. Such a model can, however, be of great value to nursing care and operating practice. Such a framework is available to us via several qualitative studies and a “narrative understanding of the illness experience”. The usefulness of this body of literature will be examined in the ensuing discussion. In the conclusion, I will stress the value of a qualitative, person-oriented perspective (the “illness experience”) for a humanistic medical and nursing practice.
This dissertation is based on a lengthy review of available literature on the social and psychological impact, including anxiety and depressed moods, on people who are artificially fed via a tube-based on percutaneous endoscopic gastrostomy (PEG), This review allows me to examine the emotional costs involved in PEG tube feeding, especially concerning experiences and the coping with the emotional (anxiety, depressed mood) and social costs of tube feeding before, during and after the placement of a PEG tube. This dissertation takes the patient’s point of view and reviews two groups of literature in depth: one of the two is person-and qualitatively oriented and proposes a meaning-centered, qualitative, and humanistic method/perspective. At the same time, one realizes that patients are found in a larger health care context where medical and health care professionals operate. Their and the perspective of medicine must be understood as well. Byron Good’s (2008) book on Medicine, Rationality, and Experience provides a good introduction to their and the patient’s perspective. It is therefore meaningful to compare and contrast the views and perspectives of these professionals and the views that patients express, their way of coping with PEG tube feeding, their modes of reasoning, their various feeling states (anxiety, depression), and the lives they live.
I have chosen to highlight a conceptual framework in this dissertation that brings out the distinct modes of patients concerning reasoning, feeling, and coping. The two modes of apprehending sickness have been defined and distinguished as “disease”, the diagnosis of the disease is based on external medical criteria or, “the malfunctioning of biological and/or psychological processes”. This perspective is often associated with the health care professions, including nurses and doctors. “Illness”, on the other hand, is defined as the personal reaction to “perceived disease” (Good, 2008). Illness is, by this definition, a personal construction and refers to the world of the patient, his/her coping with illness, and artificial tube feeding. The dissertation thus organizes its analysis and discussion of the literature in terms of the “disease-illness“ distinction and the encounter between the two parties, with a particular focus on patients, their narratives, and mental states of anxiety and depression. The implication for operative practice shall be stressed throughout.
Symptoms and treatment choices involve a network of meanings. “Illness” is perceived through the dominant symbols of the body – the head, the heart, the stomach. These symbols are not necessarily organized neatly in a body of knowledge or a single theory of sickness. Accordingly, a distinction between “disease” and “illness” is necessary, since many of the” illness data” only become available to the interviewer: they are implied in utterances rather than being articulated in explicit ideas and being quantifiable in a questionnaire (e,g., older questionnaire studies and epidemiological and statistical assessment of perceptions held by geriatricians toward PEG feeding; Roberge et al., 2000). These symbols are often only accessible when interviewing (not in quantitative and survey work, however important these kinds of data also are) and focusing on “perception” (e.g., Brotherton et al, 2006, 2007; Brotherton and Abbott, 2009).
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